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...Having the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be...

...Traveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA)...

...Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie...

...I often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable...

...As any typical parent will experience the day when your last child leaves the childhood home.  At this point we are called...

...My sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and...

...One of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back...

...Mike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned...

...We asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted...

...We asked our Patient Leaders if they have any stories (humorous or otherwise) that only someone else with SMA or a disability...

...I can't tell you how many times I've Googled "Things to do in the winter when bored," or "Boredom busters" just to...

...In previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to...

...The other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job...

...We asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with...

...For people living with chronic health conditions, managing weight can be a particularly challenging task. Balancing the demands of managing symptoms and...

...The last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we...